Hi,

I am looking for any possible help anyone might be able to give.  I am at the end of my rope and don't know what to try next.  I just know that I have to get some sleep!  

I have sleep apnea, diagnosed almost 3 years ago.  For me, CPAP was a lifesaver.  I used a Nasal Aire and was able to do really well.  This April and May, though, I had a really bad virus that caused me to cough like I never had before.  For weeks, I had to sleep in the recliner because I would wake up choking and coughing otherwise.

I finally got past the virus, but since then, I have had nothing but trouble with my CPAP.  I wake up a lot, can't get to sleep and average about 4-5 hours of non-quality sleep a night.  For some reason, I also have a tough time sleeping during the day on the rare opportunities I have to do so.  It's really been the summer from hell, because I've also had an increased workload, been moving and found out I have diabetes.  So I understand there may be other factors at work here, but even since that's all sorted itself out (move done, job slowed down, blood sugar under control), I still am not sleeping.  I have seen the doctor numerous times, tried a chin strap, went in yesterday and wanted to ask for another sleep study, and actually cried when he wanted to try a full face mask before a sleep study, because if it does not work, I have yet another month or so to deal with the total exhaustion I've been living with.  I spent two hours trying to get the new mask to work last night, but could never get breathing well and panicked several times because I would doze, then felt like I was suffocating and couldn't get it off fast enough.  I am committed to trying it again for at least four or five more nights, but last night wasn't promising.

Okay, enough whining, any suggestions out there?  I'm at my wit's end.  It's so frustrating because I had something that worked very well before this summer.

be patient and do lots of positive thinking, try daytime naps with the machine and full face mask
try without using the ramp for reduced pressure at first

guest wrote:

Hi,

I am looking for any possible help anyone might be able to give.  I am at the end of my rope and don't know what to try next.  I just know that I have to get some sleep!  

I have sleep apnea, diagnosed almost 3 years ago.  For me, CPAP was a lifesaver.  I used a Nasal Aire and was able to do really well.  This April and May, though, I had a really bad virus that caused me to cough like I never had before.  For weeks, I had to sleep in the recliner because I would wake up choking and coughing otherwise.

I finally got past the virus, but since then, I have had nothing but trouble with my CPAP.  I wake up a lot, can't get to sleep and average about 4-5 hours of non-quality sleep a night.  For some reason, I also have a tough time sleeping during the day on the rare opportunities I have to do so.  It's really been the summer from hell, because I've also had an increased workload, been moving and found out I have diabetes.  So I understand there may be other factors at work here, but even since that's all sorted itself out (move done, job slowed down, blood sugar under control), I still am not sleeping.  I have seen the doctor numerous times, tried a chin strap, went in yesterday and wanted to ask for another sleep study, and actually cried when he wanted to try a full face mask before a sleep study, because if it does not work, I have yet another month or so to deal with the total exhaustion I've been living with.  I spent two hours trying to get the new mask to work last night, but could never get breathing well and panicked several times because I would doze, then felt like I was suffocating and couldn't get it off fast enough.  I am committed to trying it again for at least four or five more nights, but last night wasn't promising.

Okay, enough whining, any suggestions out there?  I'm at my wit's end.  It's so frustrating because I had something that worked very well before this summer.

Hi,

The fact that you were compliant and were getting positive results from cpap is good. Your problems seem to stem from your virus and the fact that you were unable to use cpap.

Just a suggestion, but you need to get positive about cpap again. It did work and it will work again.

Try getting into a bedtime routine (sleep hygiene) with everything positive. You might like to try wearing the mask while watching TV before going to bed etc. Have you considered going back to nasal aire ? The devil you know and all that !!! A full face mask can be a little claustrophobic.

Daniel


_________________
The untreated Sleep Apnoea sufferer died quietly in his sleep.......
Unlike his three passengers who died screaming !!!!!!

(Anon)

Daniel,
Thanks for the reply.  I may not have been really clear.  I never stopped using my CPAP - I am very compliant because I simply cannot sleep without it.  However, I got to the point that I was not sleeping WITH it either, which was extremely frustrating and exhausting.

I love the NasalAire, and had been very happy with it for 2 1/2 years.  After the virus, though, I would go to bed with a good seal, like before, but would end up waking up either choking or with an extremely dry mouth and throat, or both.  I got so run down this summer that I could hardly do my job.  

I want to stay with the NasalAire, but it's not working.  I still think it's a pressure problem, but my doctor doesn't think so, and has me trying the full face mask.  I absolutely hate the thing, but after using it almost a week, there is some improvement, though I still wake up several times a night with the seal broken.  The sleep I am getting is of better quality, though, because I've moved from exhausted to just  tired during the day, which is a great improvement for me.

It just doesn't make sense to me that this could not be a pressure problem.  I personally think that the extreme coughing that I had with the virus weakened something in my airway and that the pressure just isn't enough to keep it open, so it closes and forces my mouth open.  My doctor dismisses this theory, however, and isn't keen to do another sleep study.

I appreciate any ideas or input.

Thanks!

guest wrote:

Daniel,
Thanks for the reply.  I may not have been really clear.  I never stopped using my CPAP - I am very compliant because I simply cannot sleep without it.  However, I got to the point that I was not sleeping WITH it either, which was extremely frustrating and exhausting.

I love the NasalAire, and had been very happy with it for 2 1/2 years.  After the virus, though, I would go to bed with a good seal, like before, but would end up waking up either choking or with an extremely dry mouth and throat, or both.  I got so run down this summer that I could hardly do my job.  

I want to stay with the NasalAire, but it's not working.  I still think it's a pressure problem, but my doctor doesn't think so, and has me trying the full face mask.  I absolutely hate the thing, but after using it almost a week, there is some improvement, though I still wake up several times a night with the seal broken.  The sleep I am getting is of better quality, though, because I've moved from exhausted to just  tired during the day, which is a great improvement for me.

It just doesn't make sense to me that this could not be a pressure problem.  I personally think that the extreme coughing that I had with the virus weakened something in my airway and that the pressure just isn't enough to keep it open, so it closes and forces my mouth open.  My doctor dismisses this theory, however, and isn't keen to do another sleep study.

I appreciate any ideas or input.

Thanks!

Hi,

After the Nasal Aire, a full face mask must feel like a diving mask (see sleepydave's avatar).  :lol:
I still think your problem goes back to the virus. Is there a possibility that the virus forced you into mouth breathing ? A dry mouth, choking (maybe due to dryness) might indicate that your mouth is open during sleep. The fact that you were not getting restful sleep could be down to the air escaping from your mouth and not splinting the airway open.

Your own theory might also hold water, and again goes back to the virus. There is a possibility that there is remaining swelling in the airway, and as you say, the pressure is insufficient. Rather than a full sleep study, could you beg, borrow, steal or rent an auto titrating machine for a few nights. It would cetrtainly prove or disprove our theories......

Daniel


_________________
The untreated Sleep Apnoea sufferer died quietly in his sleep.......
Unlike his three passengers who died screaming !!!!!!

(Anon)

Daniel,

Thanks for the reply.  It's been a frustrating time and it's good to have someone listen and not just blow me off about this.  It still seems logical to me that since this all started with the virus I had, it probably had something to do with these problems, and maybe it could be fixed if we could figure out what.  My doctor just says that sometimes things change with CPAP and you have to live with it.  

My co-workers, who can see how bad I have felt, have urged me to look for another doctor, but this one is the only one in the area and I would have to travel 30+ miles to get a different one.  My PCP is sympathetic and has tried a few things like a round of cortisone to try to clear up any remaining inflammation from the virus, but he also defers to the sleep doctor on the CPAP, which I'm sure he has to do.

Interestingly, I have also developed low-level diabetes during this summer.  Some of my reading indicates that sleep deprivation can cause problems with blood sugar, so I wonder if I could get this fixed, that might also clear up.  Between the two problems, my energy level has been in the tank all summer.

I wouldn't know how to go about looking for an auto-titrating machine.  Would a DME supplier rent something like that?  How long would it be necessary to use it and how would I know the readings?  Any information would be appreciated.

guest wrote:

Daniel,

Thanks for the reply.  It's been a frustrating time and it's good to have someone listen and not just blow me off about this.  It still seems logical to me that since this all started with the virus I had, it probably had something to do with these problems, and maybe it could be fixed if we could figure out what.  My doctor just says that sometimes things change with CPAP and you have to live with it.  

My co-workers, who can see how bad I have felt, have urged me to look for another doctor, but this one is the only one in the area and I would have to travel 30+ miles to get a different one.  My PCP is sympathetic and has tried a few things like a round of cortisone to try to clear up any remaining inflammation from the virus, but he also defers to the sleep doctor on the CPAP, which I'm sure he has to do.

Interestingly, I have also developed low-level diabetes during this summer.  Some of my reading indicates that sleep deprivation can cause problems with blood sugar, so I wonder if I could get this fixed, that might also clear up.  Between the two problems, my energy level has been in the tank all summer.

I wouldn't know how to go about looking for an auto-titrating machine.  Would a DME supplier rent something like that?  How long would it be necessary to use it and how would I know the readings?  Any information would be appreciated.

Hi,

There is a link between Sleep Apnoea and Type 2 Diabetes. You should get that attended to. I was led to believe (don't ask by who) that cpap helps in this department, but if your sugars are out then that creates numerous other problems.

Your primary care doc is displaying a typical response. In short he doesn't really care as he doesn't know a lot about it.

Now the auto adjusting machine.........DME suppliers often have a range of returned equipment which often finds its way into sleep clinics as demos. It might be worth your while to approach your DME and try and do a deal for a loan of one for say 7 days. You might even suggest that you might like to buy one. Get one with a memory card so that your data can be downloaded. Even if you have to rent one it would be worth while.

Daniel


_________________
The untreated Sleep Apnoea sufferer died quietly in his sleep.......
Unlike his three passengers who died screaming !!!!!!

(Anon)